It was very clear with my first hand that I needed NA and RT. My dilemna was do I do NA first or RT. I had NA about 4 months before RT. I also delayed RT because of conflicts on my personal calendar which turned out to be a good thing. This became significant to me: I saw Dr. T for first consultation in early May '09 and nodules were evident, scheduled RT for July 6th at which time MULTIPLE more nodules were felt and area to treat clearly needed to be greatly extended. It was a very active case and RT did the job. So, the lesson to me, rushing in too fast might not be best. Even though there was a large margin initially planned around the nodules that were palpated, it would have seemed absurd to RT the whole palm, all MCP joints, and my whole thumb up to the nail. 6 weeks later, it was evident that the whole hand needed to be radiated.

Jump ahead 2 years later to my left hand. Cording started from my thumb to my forefinger. Then nodules began forming in my forefinger. I went for a consultation at LLUMC. Advised that I could wait but keep a watch. This was/is a very different hand - slowly progressed, remained in that same area of my hand, did not spread, watched and waited. A year and a half later, nodules in the forefinger started hardening and tightness between thumb and finger was getting increasing. Activity seemed to be lessening. Was this the point that I needed to have RT or just not have it? How do you ever know for sure? I had experience with the first hand to compare. I still didn't rush in a panic like I felt in my first hand. I did decide to have RT of thumb-forefinger area and margin of at least one inch. Everything seems to be fine.

Seems like I made the best decisions. For sure, I made the best decision with what I knew at the time, but I don't know how you can ever know for sure. You can't prove something that never happens.

STUPID DISEASE!!!!!!!!!!!!! Anybody agree with that?

Only you can know the best option 'cause you know your hand best and know the progression. You make the decision for what's best for you based on what you know.

You've probably already considered this. The only thing that I'll mention is only based on my understanding and I'm certainly not an expert, except probably an expert about my own hands. If there is currently tissue with no disease, which may well be, and at some later time this stupid disease (for some reason I like calling it stupid) decides to show up in that tissue that has already been radiated, can you have radiation again? I haven't kept up with what protocol you plan to use. With the lower dose that I chose, it would be possible to radiate again and the total dose would still be OK. You could ask your radiologist about this.

You are considering everything and researching extensively. Consider it all, make your decision, and then go with whatever that decision. That's all any of us can do. Whatever you decide, you'll be fine!

Callie,

I am sure your experienced RT professional will know best. However, here is an extract from the recent Phase III Clinical study on RT for DD by Prof. Seegenschmiedt et al.:

"We usually apply an individual shielding of all uninvolved parts of the palm similar to the procedures proposed by Keilholz et al.( 1996, 1997 ); however, this may allow DD progression outside the RT portal if the longitudinal and lateral
extension of the disease have been underestimated. Thus, large safety margins of at least 1–2 cm around
all visible and palpable lesions should avoid this problem. We do not apply total palm irradiation to avoid
unnecessary side effects. We believe that out-field DD progression that occurs not very often is then subjected to a second RT series, as long as no major overlap with the primary RT portals exist; in contrast, in-field progression
may require surgery."

I wish you well in your treatment. Always a hard decision when we know a little bit ourselves as patients.

wach:

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Hi callie, I am somewhat surprised about the answer of your doctor. The answer to this question is usually NO. Or more exactly, it depends on the dose that you received in course of the first tretament. For safety reasons the life time dose should not exceed 30 Gy anywhere on your hand. If a region of your hand was irradiated with 30 Gy in the 1st treatment, then you can't irradiate that region again. That's the reason why it is not recommended to irradiate the whole hand but rather the nodule and the area around it, as shown on http://www.dupuytren-online.info/dupuytr..._therapies.html. Of course you wouldn't want to miss already existing nodules either. Therefore this requires thorough palpation and an experienced doctor. Even then the doctor might miss very small nodules and that's the rational for treating the whole palm but you should understand that then you cannot RT new nodules later again. Of course, if the initial treatment only included, say, 15 Gy then you might have another 15 Gy sometimes later.

Maybe there was a misunderstanding in the discission with your doctor. It might be worth raising this again with him.

Wolfgang

Quote:

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I actually got a different answer from Prof Seigenschmeidt, who has treated my hands several times. He said he is comfortable with doing up to three treatments pre-surgically (up to 50 gys.) Four treatments total are possible, but he likes to reserve the fourth in case surgery is needed sometime (since surgery can trigger new disease, RT may be needed after the surgery to combat this).

He also said that his concern about doing more than four treatments is not due to risk of cancer - he said that risk remains very small, and that your hands receive more radiation from the sun. Rather, the concern is that too many treatments could damage the skin's ability to heal if future surgeries are needed.

I have already had 50 gys applied to some portions of my left hand (20 gys by Dr. T at Scripps, and then two series (15 gys each) by Prof S. The area treated by Prof S included most of the area treated by Dr T but was much larger.

Based on what I've been told by Prof S, I definitely agree that areas without active disease should not be treated. However, it is very important that all areas of active disease are identified and treated, even where the disease is not yet visible. In my judgement this is why I had problems following my initial treatment with Dr. T - I believe the area he treated on my left hand was too small, and that this is why I had new growth just outside the treated area about a year after treatment.

Maddie

Wolfgang,

This is a good conversation, and thank you for checking with Prof. S. I was very specific with my question with the Dr. because I feel it is/was an important question. The answer was that this is such a small dose (and very shallow) that future procedures (RT) would not be a problem. I will get a further clarification as I continue to probe.

I have had zero side effects from my completed first round.